Sadly, Jacob's medical journey is not that rare. Every day hundreds of children walk apprehensively through the doors of a cancer clinic to begin their first treatment. Behind them, their bleary eyed parents slowly shuffle in and peer around at the staff, volunteers, and dozens of bald-headed children and silently whisper "God, please let me wake up." Accordingly, it is not the medical journey per se that the foundation celebrates; it is the approach and attitude that Jacob possessed during his five and a half year battle with childhood cancer that we wish to embrace.
Jacob was just twenty-three months old when he was diagnosed with acute lymphoblastic leukemia (ALL) in October of 1999. What started as a standard treatment protocol turned into a five and a half year battle with amazingly resilient cancer cells in his central nervous system. In April of 2001, during his fourth maintenance cycle of chemotherapy, Jacob developed his first of multiple central nervous system (CNS) relapses. He continued to receive chemotherapy coupled with cranial radiation while a search for a matching bone marrow donor ensued. Even though a search of eight million bone marrow donors took place, there was not a single match to be found; not even an "almost" match. Jacob continued with heavy doses of chemotherapy until his second CNS relapse occurred in October 2002. By this point, his baby sister had arrived and preparations were then made for a sibling stem cell/bone marrow transplant that finally took place at the University of Michigan in January 2003. Unfortunately, the bone marrow transplant failed to keep his cancer at bay and he suffered his third CNS relapse just 82 days after transplant. Jacob continued his battle with childhood cancer for another two years during which time he endured multiple systemic chemotherapy treatments, additional cranial radiation, and a port placed in his head to directly access the fluid surrounding his brain. He never complained; he never was angry; he never let it get him down. He simply kept up the fight until finally succumbing to leukemia on May 20, 2005.
Jacob possessed an exceptional, in all probability photographic, memory. He started reading books at the age of two and took a quick interest in the world around him. He could recall every state capital and show you exactly where that state was located by the age of three. By age four, Jacob was immersed in mathematics, geography, history, and, of course, sports. He had an uncanny ability to recall every fact, time, date, and score of every school, every team, every player, and every game he ever read about, saw on television, or witnessed in person. By the time he was five, he was happy to discuss politics with you and could tell you about all forty-three Presidents, their political affiliation, and their wives names. His favorite game in the car was "20 questions" and his favorite channel was a tie: any channel that had sports on it and "The Game Show Network". While at the hospital receiving in-patient chemotherapy, Jacob could often be found playing his favorite game: "trivia with the staff." In the five years of treatment at the University of Michigan, Jacob would often be in transit through the hallways of the hospital only to have someone yell out "Jacob!" He, of course, remembered their name, which department they worked in, and specifically when he had first met them. Often his parents would have to later turn to him and whisper "Jacob, who was that again?"
During the final few months of Jacob's life, he took an interest in the harp. Julie Hussar, from the University of Michigan health system Gift of Arts Program, would often spend time in Jacob's hospital room initially playing, and eventually teaching, the harp to him. The music you hear on this website is hers and she graciously allowed us to use it. This music was played continuously in his hospital room during Jacob's last few weeks of life. Thank you for sharing your gift Julie.
Jacob would be upset if we failed to mention all the wonderful people that took care of him at the University of Michigan for five and a half years. The names are many, but please know that we truly appreciate everything you did for him. The compassion of the doctors, nurses, support staff, and friends was extraordinary. Regrettably, the final outcome was not as we had imagined, but please do not think your efforts were in vain. The love and friendships built over the long battle were real. You watched him grow up and he cared deeply for all of you. Don't give up the fight.
Finally, it was Jacob's empathy for others that was truly inspiring. He would often recognize when a new child had entered the clinic and was perhaps reluctant to receive treatment. Worried that they might feel bad, Jacob would often stop what he was doing to help the new patient understand what was about to happen. When parents would ask about his previous surgeries or treatments, he would casually wave his hand and respond by saying "aw heck, that was a piece of cake. I'm all right." It was his unconditional love and caring for staff, family, friends, and fellow cancer patients that our foundation celebrates.
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